First treatment at home

Discussions for Patients, Family, and Friends HD For Patients
#1

Stacy and I will be doing my first treatment at home on the Baby K this morning while the nurse watches on. It’s the first day of freedom from the clinics.

I would like to request everyone’s help on a project. I want to discuss with my doctor getting on nocturnal dialysis, and I would like to go in with all of the information that I can possibly put my hands on, so if you know of any studies that show how nocturnal is better overall for the patients, please let me know. Also, to anyone doing nocturnal, if you wouldn’t mind I would like to hear all of the benefits you have had and how being on nocturnal has impacted your life and the positive things that you have experienced with this form of treatment.

Thanks for all that post here; you all have been a wealth of information.

Richard

#2

I have been home for about 3 and a half years. This gave me my life back! There many weddings I missed because I couldn’t get a transient spot. Also my hair started to fall out in center but it came back after I got home, I had poor wound healing in center but it is normal now, I had bouts with insomnia,poor appetite, and mood swings that have all resolved since I got home. I could go on and on let me know if you need more. There are also many things published the moderators may be better able to guide you on that.

#3

Do a Google web search on nocturnal dialysis and you’ll come up with hundreds of references. Or try pubmed.gov for clinical papers from the National Library of Medicine.

We’ve been doing nocturnal dialysis for more than four years with a regular 2008K (or a NxStage machine when we travel). We start at 9:30pm and are done by 7:00am or so six nights/week. In my view the gains from going from short daily to nocturnal are very significant. Slow, gentle rates mean you don’t feel the dialysis, no phosphate binders and you can eat whatever you want, normal blood pressure means you can throw away BP meds, normal pre-dialysis BUN, your cardiovascular health improves. In short, it will put you reasonably close to being a person with normal kidneys, and the schedule will let you get your life back.

You are in the most tense period right now, but that will pass with a little experience. Initially, the hardest part is to avoid panicing when something goes wrong. I think I’ve made every conceivable kind of mistake by now. You’ll find the Fresenius techs who are available to you 24/7 are very helpful and also very understanding of stupid mistakes.

You’re on exactly the right path to a longer, higher quality life with home dialysis which will be even better when you transition to nocturnal. Just as few people who have gone to home dialysis would ever go back to thrice-weekly in-center voluntarily we feel the same way about going back to short daily from nocturnal.

Mel

#4

First, thank you to all who have responded to this thread on nocturnal dialysis. I apologize that I have not responded before today, but I have been in the hospital.

I have a new question that somewhat concerns me, though, that I would like to get feedback on. While in the hospital, I was under the care of my cardiologist, but my nephrologist also followed my treatment and made daily visits to see me; this was not my regular nephrologist, but one of his partners.

In the meantime, I missed my monthly clinic visit with my regular doctor, who I wanted to discuss nocturnal dialysis with, and decided that it would probably be a good idea to make an appointment to speak with him in his office; however, we were denied this opportunity because I was already a dialysis patient and they only see people for evaluations in the office. I was told that if I want to speak with him, then it will have to be done in the clinic setting. FYI… he doesn’t come back to the clinic again until mid-January.

Is this something that occurs regularly and something that is widely practiced among nephrology groups… that you cannot make an appointment to see your doctor in the office? What if there was something personal that I wanted to discuss with him and did not want the social worker, dietitian, and nurse present during this discussion?

Stacy and I were just somewhat shocked at this latest occurrence and wondered if this was a normal practice for most nephrologists.

Thanks again for all of the responses already to the nocturnal question.

Richard

#5

That doesn’t sound right to me - I see my doc only after making an apointment and going into his office.

There is one reimbursement for following people while they are outpatients: if you’re incenter the payment is based on the number of times they see you, or if you’re a home patient it’s a flat fee equivalent to three visits a month.

In addition to this there is a different reimbursement for following you while you’re in the hospital. So the fact that you were followed in the hospital should not impact the payment for doctor visits once you are out of the hospital.

I thought that part of the reimbursement rule changes to pay based on the number of times your doc sees you included language to assure that dialyzors could still see their doc in the privacy of their office.

#6

[quote=RichnStacy;11636]First, thank you to all who have responded to this thread on nocturnal dialysis. I apologize that I have not responded before today, but I have been in the hospital.

I have a new question that somewhat concerns me, though, that I would like to get feedback on. While in the hospital, I was under the care of my cardiologist, but my nephrologist also followed my treatment and made daily visits to see me; this was not my regular nephrologist, but one of his partners.

In the meantime, I missed my monthly clinic visit with my regular doctor, who I wanted to discuss nocturnal dialysis with, and decided that it would probably be a good idea to make an appointment to speak with him in his office; however, we were denied this opportunity because I was already a dialysis patient and they only see people for evaluations in the office. I was told that if I want to speak with him, then it will have to be done in the clinic setting. FYI… he doesn’t come back to the clinic again until mid-January.

Is this something that occurs regularly and something that is widely practiced among nephrology groups… that you cannot make an appointment to see your doctor in the office? What if there was something personal that I wanted to discuss with him and did not want the social worker, dietitian, and nurse present during this discussion?

Stacy and I were just somewhat shocked at this latest occurrence and wondered if this was a normal practice for most nephrologists.

Thanks again for all of the responses already to the nocturnal question.

Richard[/quote]

That sounds odd to me as well, as Bill stated. That did happen to me at my last dialysis clinic I was at…at first they were allowing one a month office checkup visits, then they told me no more…that they will see me on the floor while on dialysis. That’s something I did not like at all…no privacy…everyone on the floor was there and seeing, hearing everything. That’s something I am totally against. I am glad I am not there anymore.

I think some Nephrologists do this to cut down on workload. They may have too many patients to assist so they take new patients as priority and all others who are on dialysis already last.

With a little patience hang in there and wait till you get a chance to talk to your Doctor. Luck!

#7

There is no federal or state regulation that says that home dialysis patients can only see their nephrologist in the dialysis clinic. This is one of the sites where patients meet with their physician but others on this board have discussed how they regularly meet with their physician in their office. In fact, when I worked in dialysis, I encouraged patients to make an appointment to talk with the nephrologist in their office when they needed to have more time to talk with the doctor than they could have in the clinic setting. The issue may be a payment one. As Bill said, for home patients a nephrologist is paid a monthly fee (called the monthly capitated payment) that is comparable to the 2-3 visit rate for in-center HD patients. Physicians can only bill extra if the patient is seen additional times for other than his/her renal condition. Most doctors see home patients once a month. For hospital days, the doctor is paid a daily rate but then the monthly fee must be prorated to be reduced by the number of days you were hospitalized.

In my opionion, if your physician is conscientious, he/she would be willing to see you another time occasionally because he/she is already getting paid as if he/she saw you 2-3 times every month and he/she is only seeing you once a month. If he/she is not willing to see you in the office on the rare occasion that you request this, I might consider finding a doctor who was willing to better meet my needs.

#8

When Ralph was in center as well as now on nocturnal Nxstage, he would see the one of the doctors from the practice at the center and than we had to see him once a month in the office. We also saw the doctor who was regularly at the clinic (who was not part of the practice) but was over seeing the clinic. I have both our doctors cell numbers if I need to talk to them. Needless to say I save those numbers for emergency situations.
So Rich & Stacy I would not feel comfortable with them if they wouldn’t talk to me when I needed to talk to them.
Good luck.
Pat

#9

Oops, not sure how I missed this. We have a 46-page bibliography of published research articles that support daily and nocturnal dialysis that is updated periodically by Dr. Carl Kjellstrand, a nephrologist and PhD who is a very strong supporter of these home therapies. You can download this and share it with your doctor. It’s at: http://www.homedialysis.org/v1/resources/pdfs/LITT_update_7-1-06.pdf.

As far as your doctor, I agree with Beth: if he refuses to see you in the office, consider finding another doctor who has more respect for your privacy and your wishes.

#10

I am always interested to hear ideas for how to find a better neph.

#11

Here are some ideas on choosing a doctor:

– Get a list of nephrologists that are providers with your insurance company.
– Ask your friends if they know anyone who has used that doctor and talk with that person about the doctor’s skill, personality, communication style, etc.
– Find out what nephrologists practice at the dialysis clinic you go to or want to go to. Find out if the clinic is open to letting other nephrologists admit and follow patients. If there is more than one nephrologist who practices at the clinic and another nephrolologist is more accommodating and respectful, I’ve known patients that changed from one nephrologist to another. I’ve also known patients who changed dialysis clinics to get a different nephrologist.
– Set up an appointment to talk with the prospective doctor about your health. I suspect he/she will be interviewing you at the same time you’re interviewing him/her.

Here’s an online article from AskMen.com that suggestions ways to choose a doctor:
http://www.askmen.com/sports/health/31_mens_health.html

#12

In some places there may not be many Nephrologists to choose from, however it is always important to remember that the sh/e works for us. Just like any other service provider, if s/he is not meeting your needs and your needs are reasonable you should look for a new service provider.

I think all too often medical doctors treat patients as if we are lucky that they have the time to see us. And, in many cases we as patients get use to being treated that way. At times we will wait 45 minutes in a small examination room with the door close after having waited 30 minutes in the waiting room.

Last week at my ENT doctor, I told myself that after 30 minutes in the examine room that I would leave in order to make my other appointments (one being dialysis clinic). As the time ticked away I wondered if I would have the courage to get up and leave. When the hand struck the appointed minute I got up and kindly told the nurse that I had to go. About ten minutes later I was in my car and my phone rang. My doctor and I held the appointment over the phone since it was just a follow up for a sinus infection. This particular doctor has been very accomodating so I gave him the benefit of 30 minutes but I drew the line there.

Remember without us they would not have a job, just like a clerk at Walmarts.

Good luck with your Neph. Erich

#13

Thank you all who have responded with your support. Stacy and I did not feel that the request to meet with him in his office, the first such request since starting dialysis almost two years ago, was unreasonable; however, since I was not sure if this was how most groups did it, I wanted to get some feedback on the situation. It has made me extremely uncomfortable because now I don’t feel that if I have a problem that I wanted to discuss with him that I could reach him in a timely manner, such as an appointment. As it is, I now have to wait until the middle of January to see him again in-clinic. I was hoping to have the opportunity to speak to him a lot sooner but, because of their rules, I have no choice but to wait.

There are 20+ doctors in the nephrology group, and they are all involved with the same for-profit outfit that is basically a monopoly in this area. I don’t really have any other choices at the moment, but we have been talking about moving some 500 miles away from where we are now located so that I can get on NxStage. It seems that it might be a good idea for more than one reason now.

Thanks again everyone for your responses. I really do appreciate you taking the time to share your thoughts with us.

Richard and Stacy